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I was very lucky to spend last weekend at The Calvert Trust in Exmoor, with 14 other families who, like me, have a child with the genetic muscle wasting impairment, Duchenne Muscular Dystrophy (DMD).  If you don’t know, The Calvert Trust is an amazing organization that runs 3 outdoor activity centres in the Lake District, Northumberland and Exmoor where disabled children are able to take part in activities alongside non-disabled family and friends, such as abseiling, canoeing and climbing.

The best part about the weekend was that it suddenly felt like the wheelchair had disappeared.  There was a functioning lift to reach the upstairs rooms, and doors opened automatically when you approached them.  The swimming pool had a hoist; climbing harnesses and zip wires were adapted for people who couldn’t weight-bear; and even the jetty where we climbed into our canoes had a simple outdoor hoist. Hardly rocket science or at huge expense, despite claims to the opposite from many shops, restaurants and other public venues who often seem to view wheelchair access as complete anathema.

Before the 1970s, disability was mainly viewed from a bio-medical perspective. This means it was seen as a personal tragedy, the fault of the disabled person who was viewed as a victim suffering from his/her impairments, not capable of directing his/her own life. In the 1970s, a group of British disabled campaigners and academics who were fed up with having decisions made by other people about how they lived their lives, developed what is known as the ‘Social Model of Disability’ (UPIAS 1976). The social model defines disability as

‘…the disadvantage or restriction of activity caused by a contemporary social organisation which takes now or little account of people who have impairments and thus excludes them from mainstream of social activities'( UPIAS 1976: 14)

In other words, according to the social model, there is a difference between an impairment that you are born with, and disability. The latter is caused by a society that does not offer accessible buildings, trained staff, assistive technology and other support systems and adjustments that could bring equality of opportunity for everyone. These ideas have been key to achieving better legislation such as  the Equality Act and form much of the theoretical underpinnings of the Special Needs Code of Practice (DFE & DoH 2015) which places responsibility on schools and local authorities to meet the needs of disabled young people, rather than look for ways of ‘fixing’ these young people.

Of course all the ramps, hoists and support systems will not remove the difficulties that are caused from having a degenerative muscle wasting impairment like DMD. Carol Thomas has argued that even though people are disabled by society, they can have impairment effects that impact on day to day living and are caused by a particular medical impairment. In the case of DMD, a shortened life expectancy, paralysis, cardiac and breathing complications as well as a range of learning and behaviour challenges could all be viewed as impairment effects. Jon Hastie, an adult with DMD, has recently written that DMD is not something to be celebrated as it robs people of their ability to live life to the full and has a devastating impact on their families and friends (read Jon’s blog here).

Amazing work is being accomplished by tenacious and determined parent and user-led organisations across the world, who are campaigning and fundraising to support research into treatments and cures. This week the pharmaceutical company PTC Therapeutics, along with experts and families will be meeting the Federal Drugs Agency in Washington aiming to gain approval for a genetic treatment that can help a small percentage of young people with DMD.

The landscape of medical science for DMD has changed enormously over the past fifteen years, and a number of clinical trials are now taking place that will hopefully mean that its bleak prognosis can be changed.    However, as a parent of a young person with DMD, the social model has been liberating and I would agree with the words of disabled activist Liz Crow when she said that her life has two phases: ‘before the social model of disability and after it’ (Crow 1992).  The idea that disability is not something that is diagnosed but rather something that is created by society is essential in our fight for resources and support. My son’s impairment is not something that demands pity but rather decent support and resources for him to reach his aspirations, as well as funding for research to find a cure.

As others have argued, resilience is not about having the ability to ‘bounce back’ or being a super-parent, but it is a civic responsibility (Ungar 2005; Runswick-Cole & Goodley 2013).  The past seven years in the UK have seen the celebration of neo-liberal values, where health and social support are viewed as commodities rather than rights. Disabled people have been depicted as ‘scroungers’ and ‘skivers’, creating an ‘us and them’ mentality (Runswick-Cole 2014). This has been supported by the programme of Austerity , that has implemented targeted attacks on the most vulnerable in society, in particular people with complex disabilities (Duffy 2017 – see here for visual).  In a recent report, the United Nations has stated that the the UK’s Austerity policies ‘amount to violations of disabled people’s rights’ (CPRD 2016). Young people with DMD can contribute to society in so many ways if they are given the right support. In benefiting from early intervention in school to the employment of personal assistants in college or university, they can go on to do fantastic things that will be both meaningful and interesting. Of course this demands resources and national policies that celebrate diversity and inclusion rather than profit for the few.

So from our fantastic outward bounds weekend I am taking away with me the possibility of barrier removal and the exhilaration it can bring to young people who are all too often denied the opportunity of experiencing these sort of activities. I am also celebrating the families who support each other on this journey that none of us anticipated.  Lastly, it has strengthened my belief in the social model of disability and the need to make the Government accountable for funding research that could eradicate DMD, whilst at the same time supporting an education, health and social care system that can support all of our young people to reach their dreams for adulthood.

References:

Crow, L. Renewing the Social Model of Disability (1992) Early version of ‘Including All of Our Lives, Coalition News GMCDP

DfE & DoH (Department for Education and Department for Health) (2015) Special Educational Needs and Disability Code of Practice 0 to 25 Years

Duffy, S (2014) Counting the Cuts Centre for Welfare Reform Centre for Welfare Reform http://www.centreforwelfarereform.org/library/graphics-diagrams/graphic-unfair-burden-of-cuts.html downloaded 2017

Hastie , J (2017) Fundraising to Fight Duchenne: A night out with purpose http://www.dmdpathfinders.org.uk/2017/09/21/fundraising-to-fight-duchenne/ downloaded 2017

Runswick-Cole, K (2014)  ‘Us’ and ‘them’: The limits and possibilities of a ‘politics of neurodiversity’ in neoliberal times Disability & Society 29(7) · August 2014

Runswick‐Cole, K., Goodley, D. (2013) Resilience: A Disability Studies and Community Psychology Approach Social and Personality Psychology Compass 2013 Vol: 7 (2) :67-78

Ungar, M. (2005). Introduction: Resilience across cultures and contexts. In M. Ungar (Ed.), Handbook for Working with Children and Youth: Pathways to Resilience Across Cultures and Contexts (pp. xv–xxxix). Thousand Oaks, CA: Sage Publications

United Nations Convention on the Rights of Persons with Disabilities 6 October 2016 CRPD/C/15/R.2/Rev.

UPIAS 1976: Fundamental Principles of Disability. London: Union of the Physically Impaired Against Segregation.

 

 

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As someone who has worked with children, young people and adults in a range of educational settings, I have come to understand the need for a positive representation of diversity.  We strive for what we might term as ‘full inclusion’ and I see the increased labeling of our society as consistent with a need for increased understanding about what these labels mean; not in an explicit way but in a general desire to represent the diversity of our society.  I see the medium for part of this as being children and young adults’ literature as it is during their time at school that they are developing social relationships with their diverse communities.

My position as a Primary school teacher meant I played an influential role in many pupil’s lives and when I became a Special Educational Needs Coordinator later in my career, I played an even more crucial part in developing the inclusive environment.  One aspect of my responsibility was to work on a one to one basis with pupils who were not achieving age related expectations in reading and writing.  I brought in a new reading scheme, designed for pupils in Key Stage 2, advertised as having ‘cool illustrations, chunked texts and a special dyslexic-friendly font.  However, I did not look beyond the fact that they were designed to accelerate reading progress at the actual type and depiction of characters and how representative they may or may not have been of the diversity in society.  For such an important part of each pupil’s daily session with me, I was missing the opportunity to deliver implicit messages about difference.

So I thought about this and over the years have become more and more interested, especially since having a son and looking at the vast selection of books given to/loaned/handed down to him since birth up to now (he’s currently 2!).  I looked at some relevant research and wasn’t surprised to find that, historically, disabled characters have been depicted as literary symbols or seen to assist the moral development of other characters that have more significant roles in the story (Dyches and Prater, 2000). More recently, looking at the results from Dyches, Prater and Leininger’s (2009) analysis of 41 books, there were positive results of increased characterisations seen to be more positive and inclusionary than previous analyses. Whilst this is encouraging, Hodkinson’s (2016, p.12) conclusions that a reading scheme used in his son’s school serves to ‘seemingly only continue to perpetuate the image of a homogeneous, normalised and ‘ableist’ society’ is a reminder that more focus on the kinds of fictional texts that our pupils are reading in schools today is required.

So what of the reasons for developing and reading inclusionary literature?   Some motives are seen by Miller (2012/13) as being linked to increasing tolerance of difference and is in opposition to the ways in which portrayal of difference is seen in textbooks that are akin to a more medicalised view.  Similarly, Wopperer (2011) cites reasons for why we should have fictional characters with disabilities and adds that it is as a way of helping young people to make sense of their world by relating to these characters; individuals without a disability can learn how they feel about individuals with a disability and in turn enhance social connections.

This discussion around including characters who have a special educational need (SEND) can be likened to Norwich’s (2008) notion of ‘dilemmas of difference’ posing the question; will portrayal of characters with SEND emphasise difference and thus perpetuate segregation?   Everyday social experiences show us that we are all different and therefore using children’s literature as the medium through which to do this makes sense from an inclusive pedagogic viewpoint. After all, children’s literature is a powerful medium through which one makes sense of the world (Hunt, 2001).

What were you reading throughout your education and what are your children reading?

 

Reference List

Dyches, T. T., and M. A. Prater. 2000. Developmental Disability in Children’s Literature: Issues and Annotated Bibliography. Reston, VA: The Division on Mental Retardation and Developmental Disabilities of the Council for Exceptional Children.

Dyches, T. T., M. A. Prater, and M. Leininger. 2009. “Juvenile Literature and the Portrayal of Developmental Disabilities.” Education and Training in Developmental Disabilities 44: 304–317.

Hodkinson, A. (2016) ‘Constructing impairment and disability in school reading schemes’ Education 3-13, DOI: 10.1080/03004279.2016.1143520

Miller, D.L. (December 2012/January 2013) Literature opens doors for all children.  Autism. Thinkstock/Hemera. Kappan.

Norwich, B. (2008) Dilemmas of Difference and the identification of special educational needs/disability: International perspectives.  British Educational Research Journal, 35 (3), 447-467.

Prater, M.A. (2003) Learning Disabilities in Children’s and Adolescent Literature: How are Characters Portrayed?  Learning Disability Quarterly. 26. Winter pp. 47-62.

Wopperer, E. (2011) ‘Inclusive Literature in the Library and the Classroom’, Knowledge Quest, Everyone’s Special. 39 (3) Jan/Feb 2011 pgs 26-34.

 

 

Two weeks ago I attended the Action Duchenne International Research Conference at the Hilton Metropole in Edgware Road. This is a major event in the Duchenne Muscular Dystrophy (DMD) community’s calendar where over 450 delegates, including doctors, scientists, health professionals, biopharmas, people with DMD and their families meet together to share updates on current research and clinical care.

 

DMD is a rare muscle wasting impairment that affects around 1 in 3,500 male births. It predominantly affects boys as it is on the X chromosome, and girls usually have another X to compensate. Boys with DMD lose the ability to walk on average by the age of 12 years, and historically have not lived past the age of 19 years. However, more recently, with the help of interventions such as night ventilation and cardiac management they are living into their late twenties and thirties, and some into their forties.  Although still life-limiting, DMD is no longer a childhood impairment, and those who are diagnosed with it expect to live into adulthood.

 

This year’s annual Action Duchenne Conference was particularly exciting because as well as the research sessions led by scientists and clinicians, a parallel set of workshops focusing on quality of life issues was run by DMD Pathfinders. DMD Pathfinders is the first organisation led by adults with DMD for adults with DMD and is a reflection of the strides in medical care for those living with this impairment. Key to many of their sessions was how to get the best life possible whilst living with a complex and severe life-limiting impairment. All of DMD Pathfinders are wheelchair users, and most have very little movement in their bodies apart from a hand or finger. Many use full time ventilation and some have PEG bags which mean they do not eat regular food but are dependent on a specially prepared liquid diet.

 

A major aim of the new Special Educational Needs and Disability legislation in the Children and Families Act 2014 is to improve outcomes for all disabled young people as they leave full time education. This means thinking about a career you would like to follow, where you would like to live, developing your friendship groups and local networks of support and being in control of your healthcare. This is particularly pertinent for young men with DMD, who for the first time are now living into adulthood and are able to make decisions about these aspects of their lives. An Education Health and Care Plan can now last until the age of 25 years if you stay in education, and hopefully many involved in DMDPathfinders will be able to take advantage of the raised aspirations that are key to the new legislation in order to get the sort of life they want.

 

But the new legislation will only be as good as the resources that support it.  Although very early days, many families and young people are already reporting that the person-centred philosophy is a big improvement on the old system, but lack of budgets in Local Authorities mean that they are still having fight for funds to support the outcomes they have identified as important in their lives.  Similarly, this month a UN Enquiry reported that Austerity policies introduced into welfare and social care by the UK government since 2010 amount to “systematic violations” of the rights of disabled people.

 

The report is withering in its attack on the Government, testifying that cuts in PIP and Universal Credit, and the imposition of Bedroom Tax have prevented many disabled people from living independently and forcing many into residential care.  Punitive tests for PIP have meant many disabled people have been forced into jobs that have been inappropriate or dangerous, and suicide rates have risen.

 

The report also noted that a climate where disabled people have been portrayed as benefit scroungers, “lazy and putting a burden on taxpayers” has been allowed (and perhaps) encouraged (see this Guardian Report: https://www.theguardian.com/business/2016/nov/07/uk-austerity-policies-amount-to-violations-of-disabled-peoples-rights).

 

The silver lining in this depressing report for me is that it was triggered by campaigners including a group of disabled people who formed around opposing these austerity measures called ‘Disabled People Against the Cuts’ (http://dpac.uk.net/). These campaigners made a formal complaint to the UN in 2012 about violations of disabled people’s rights which resulted in last week’s report.  You may also have seen members of DPAC earlier this year storming Parliament in wheelchairs, to oppose the brutal cuts on Employment Support Allowance that Ian Duncan Smith, the then Minister for Work and Pensions, was supporting that would have had a massive impact on the lives of many disabled people. Their action not only shined a light on the plans to make further cuts to disabled people’s support packages, but it forced Duncan-Smith to resign.

 

In his polemic ‘Changing the Social Relations of Research Production’, Michael Oliver speaks about how those with wealth are able to avoid the ‘scrutiny’ of public view, whereas many disabled people and their families do not enjoy this luxury (Oliver 1992). We live in a society where paying no taxes is celebrated either on an individual or a corporation level, and where the majority of the British Cabinet are millionaires, many benefiting from offshore accounts and tax cuts. The Social Model of Disability argues that it is society that disables people and not their impairments through denying them access to both economic and emotional well-being. This oppression can become internalized and negatively impact on the goals and aspirations of disabled people (Campbell 2009).

 

For those with DMD and other complex disabilities to reach their dreams it is essential they have the support to do so. This means having a government that will invest in people so they can thrive and succeed – providing assistance for opportunities such as work experience and supported internships; transport so that they are not trapped in their homes; adapted houses and trained care staff so they are not institutionalized.

 

And it means supporting groups like DPAC when they are challenging the shocking discrimination that has become normalized and acceptable under the current climate of austerity.

 

 

References:

 

Campbell, F.K., (2009) Contours of ableism. Basingstoke: Palgrave Macmillan.

 

Disabled People Against the Cuts http://dpac.uk.net/

 

Oliver, M., (1992) Changing the Social Relations of Research Production (1992) Disability, Handicap and Society Vol 7 No 2 (1992)

Johnson and Walmsley (2010) draw parallels between the closure of the large asylums in the UK in favour of ‘care in the community’ in the final decades of the 20^th century, and the policy shift in education at around the same time away from ‘segregation’ and towards ‘inclusion’.

The advent of both inclusive education and care in the community can be said to have been nurtured by the United Nations Universal Declaration of Human Rights (1948). This brought about a number of significant conceptual shifts in both Health Care and Education in the UK. Segregated institutions of all types became subject to criticism, and this marked the beginning of the end for the large asylums (Frogley and Welch, 1993) as well as a ‘dogmatic attempt to discontinue special schools’ (Allan and Brown, 2001, p.200).  These policies in both health and education have been subject to scrutiny and criticism with the mildest of accusations being that they have suffered from what Hodkinson (2012) calls a ‘clash between ideality and practicality’ (p.7).

What is clear however, is that the perceived aims and benefits of care in the community and inclusive education have not been felt by those with the highest level of need.    The London Borough of Newham for instance was  the only education authority in the UK to accept fully the principle of  inclusion for children ‘whatever their special need’ (Newham Council, 1995), yet despite determined efforts to close all the special schools in the borough from 1984 onwards, a school catering for pupils with severe and profound and multiple learning difficulties (sld/pmld)  has survived (Jordan and Goodey, 2002), and mainstream secondary schools in the borough provide for pupils with higher level of need in resourced provision such as separate units or classrooms.

Parallels can perhaps be drawn here with the case of a user of mental health services in a large county council in the South of England. I have known ‘John’ for over 40 years. In the late 1970’s he spent several months in one of the large and very well resourced psychiatric hospitals which were once common in the outskirts of London. He was treated successfully, discharged and with GP support managed his condition for many years, had a career and a family. By the time he suffered a serious relapse about 6 years ago, the hospital which had treated him in the 1970’s – and would still have treated him today – had long gone:  its Victorian buildings bulldozed and replaced with an executive housing estate. With no home of his own John is now cared for ‘in the community’, which in his case means a drab and unregistered shared house in poor repair with no garden about 5 miles from the site of the old psychiatric hospital. The residents are looked after by care staff with no significant nursing qualifications and who provide very little in the way of social or community activities. The outlook for John is bleak and with very little contact outside the house his condition is deteriorating.

I am not suggesting in any way that the educational provision for people with sld/pmld is substandard in the same way that care provision clearly is for John. Most provision for those with sld/pmld is excellent irrespective of the setting and for the majority that setting is a special school.

What I am suggesting is that in both health and education, those with the highest level of need have not been adequately included in the parallel agendas of inclusive education and care in the community. The moral rightness of full inclusion and care in the community is axiomatic (*), and so it should be, but as Runswick Cole (2010) suggests, it can also be naïve, especially when it implies the simple placement of those with sld/pmld in inclusive settings or the simple placement of people with complex mental health conditions in the community. ‘All’ really should mean ‘all’ irrespective of cost or the challenges full inclusion might bring.

 

(*) Axiomatic = self-evident or obvious

 

References

Allan, J and Brown, S (2001) Special Schools and Inclusion, Educational review, 53 (2),     2001: pp.199-207

 

Frogley, G and Welch J. (1993) A Pictorial History of Netherne Hospital. Redhill: East Surrey        Area Health Authority.

 

Hodkinson, A. (2012) Illusionary Inclusion. What went wrong with New Labour’s landmark           educational policy? British Journal of Special Education. 39 (1): 4 – 10

 

Johnson, K and Walmsley, J. (2010) People with intellectual disabilities – towards a good life. Bristol: The Policy Press.

 

Jordan, L and Goodey, C. (2002) Human Rights and School Closure – the Newham Story. Bristol: CSIE

 

Newham Council (1995). Review of Inclusive Education Strategy: Consultation Document

 

Runswick-Cole, K. (2011) Time to end the bias towards inclusion. British Journal of Special          Education. 38 (3): 112-119

United Nations (1948) Universal Declaration of Human Rights. New York: United Nations

 

 

An immeasurable number of times, I have asked (myself and others) the question: what is the purpose of education? Often people’s answers to this question exist on a continuum from 1) an explosion of meaningless market-driven buzzwords (skills, competences, attitudes and capabilities) to 2) equally market-driven but somewhat more pragmatic understandings of education (‘to get a job’), 3) and finally, to some incredibly deep and reflective understandings of power, justice, citizenship, equity, inclusion, humanity and emancipation. But when I am to ask – what is not the purpose of education, people’s answers take on a spirit of such unanimity that it makes me proud to be human. The purpose of education is not:

• To perpetuate hatred, fear, violence, stigma and/or discrimination
• To disempower, antagonise, oppress, silence, numb, block or anesthetize learners
• To exclude, dehumanise or devalue
• To foster apathy, conformity, indoctrination and/or the uncritical acceptance of the status quo
• To kill imagination and the human spirit
• To naturalise, internalise or normalise inequalities and injustices
• To be “irrelevant to the dangers facing humankind” (Fielding & Moss, 2012, p. 28), and
• To generally make the world a more horrible, unsafe and unsustainable wasteland

If this (rather short) list is any indication of “who we are” (and who we want our children to be), then what strikes me most is the huge paradox between “what we say” and “what we do” (which seem to be at rather opposing odds). Take for example, the political “game of truths” being played with the science of climate change. Whilst on the one hand, civic entities fight against environmental degradation, on the other, in even the most “advanced” places in the world, politicians are still arguing about the existence of climate change. Where does this leave us? Are such topics too political, or in other words, too “taboo” for educators to discuss with children and young people? What is the role of education in preparing children for the future if we cannot (or do not) teach children about what is happening in and to our world? How then is it ever going to be possible to make education relevant to the dangers facing humankind?

These are just a few questions. Others are equally haunting:

• How can we, in a culture of “high-stakes” standardized testing and pre-packaged curricula ensure that we aren’t killing the imagination of learners? Particularly if “learning” is measured by memorising/regurgitating the “correct” answers?
• How can we teach children and young people not to hate, dehumanise and discriminate when disciplinary practices inside educational settings disproportionately impact “the impoverished, those of colour, maltreatment victims, students with special education disabilities, and lesbian, gay, bisexual, and transgender” learners (Mallett, 2016, p. 15)?
• How can we teach learners to be inclusive whilst the system segregates on the basis of ability and/or impairment/disability labels?
• How can we teach learners to treat others as equals whilst (increasingly privatised) education systems (re)produce ideas of who is “desirable” and “undesirable” on the basis of money and power?

The thing is, none of these things seem to happen deliberately – that is, no one educator sets out to be ableist OR kill the imagination OR perpetuate social oppression OR naturalise injustice. Practitioners may rightly argue, “that’s just how the system is, it isn’t my fault!” But systems are made of people, and just because it isn’t deliberate, doesn’t mean that we – as educators, don’t have an active role to play in challenging discrimination, oppression, injustice and inequality alongside children and families (Freire, 1970). Troublingly, research indicates that many educators tend to distance or “shy away” from teaching children about topics that are “too political” or “taboo” – not just those related to climate change, but also those related to social oppression (e.g. race, class, disability). One of the reasons that educators give for this is because they believe that these topics are irrelevant or cumbersome (“an unnecessary burden”) to children’s lives (Han, 2013; Kelly & Brooks, 2009). That, for example, being a White teacher who does not experience disability in a predominantly White, middle-to-high-income context means that one does not need to learn/teach children about racism, ableism or inequality because children “are not affected” by race, disability or class. Firstly, if the purpose of education can have anything to with transforming injustice, then injustice cannot be irrelevant to education. Secondly, this problematic creation of a “them and us” or in other words, “the othering of other people’s problems” is as frustratingly counterproductive and untrue as it is inhuman. You would think that by now it would be a truth universally acknowledged, that whatever else we are: we are ALL of us, first and foremost, human beings. Extending on the wise words of the author Richard Flanagan, the point here is, that people who experience disability, or those who are homeless or people seeking asylum – these people “are not like you and me. They are you and me” (Flanagan, 2016, para 235, emphasis added).

If we teach children to treat disability, diversity or difference with silence, or worse, polite pity, or even worse, fear and abhorrence – then we not only rob them of the opportunity to learn empathy, we also cheat them from being able to grasp or value our “shared humanity” (Cologon, 2013). Moreover, teaching children to value and embrace diversity is not the same thing as teaching children to be silent about it. Children internalize implicit views and understandings of what society has constructed as being “normal” and “not normal” – therefore, by ignoring difference and diversity we teach children that diversity, difference and/or disability are “bad” or “problematic” – something to be afraid of or avoided (Boutte, Lopez-Robertson, & Powers-Costello, 2011). By doing this, what we are also doing is teaching children to exclude and ignore rather than interrupt injustice – instead of teaching them that “exclusion, intentional or not, is a political act and, therefore, a choice” (Michalko, 2002, p. 16).

Oftentimes, the other argument put forward by educators afraid of engaging with “the dilemma of difference” is that children – particularly young children, are not capable of “seeing” difference, or that young children are not able to understand the complexities of things like racism, ableism, sexism, classism, etc. But research (and the work of many incredible educators/practitioners/families) conducted with diverse young children (who do and do not experience disability) tells us the opposite – that in fact, young children are not only capable of understanding social oppression but that they are also capable of, and motivated to, challenge and change it (Silva & Langhout, 2011; Souto-Manning, 2009). This opens a world of possibilities for educators to teach children about the ethical, social and political nature of difference, diversity and disability, and in turn, to recognise that education is an ethical and political act.

Recognising that education is an ethical and political act may seem like cause for fear, but it isn’t. What is scary, is thinking that education can be neutral or free from politics. It cannot – because to be “neutral” is to side with the status quo. For example, (as I mentioned earlier), being silent in the face of injustice only contributes to injustice, because it perpetuates the privilege experienced by the privileged, and the oppression experienced by the oppressed (Freire, 1970). Waking up – and waking other people up – to the systematic, ideological and political nature of oppression – and acting to transform or “gnaw off the arm of the system a little bit” (Horton & Freire, 1990, p. 229) from the inside, is arguably, one of the fundamental roles of education and educators.

And I won’t lie, it isn’t easy. There’s barely any room in the curriculum, or any time in the day, systems are exclusionary, resources are scarce (particularly those that depict disability in a positive light) … BUT it is possible, and it is worthwhile. Inclusive education, and education for social justice[1] these two beautiful, frightful, interconnected things wrap themselves around the “dilemma of difference” because they are never finished (Cologon, 2014). As Cologon (2010, p. 45) says, “inclusion is really what teaching is” and teaching, is as much about the process of becoming human as it is about belonging to this ever-emergent, complex and intricate thing called humanity (Cologon, 2013). This is true in more ways than one, because as the wise Belmonte (2009, p. 37) says, “we teach what we are far more than we teach what we teach” – which leads us right back to the original question: What do you think the purpose of education is?

References

Belmonte, D. (2009). Teaching from the deep end: Succeeding with today’s classroom challenges (2nd ed.). Thousand Oaks, CA: Corwin.

Boutte, G. S., Lopez-Robertson, J., & Powers-Costello, E. (2011). Moving beyond colorblindness in early childhood classrooms. Early Childhood Education Journal, 39(5), 335-342. doi: 10.1007/s10643-011-0457-x

Cologon, K. (2010). Inclusion is really what teaching is. ARNEC Connections, 3, 45-48.

Cologon, K. (2013). Recognising our shared humanity: Human rights and inclusive education in Italy and Australia. Italian Journal of Disability Studies, 1(1), 151-169. doi: http://s3.amazonaws.com/academia.edu.documents/35563168/Rivista_Vol1_N1.pdf?AWSAccessKeyId=AKIAJ56TQJRTWSMTNPEA&Expires=1471880849&Signature=dJwbMI8y0P49fzeqU1VXlqNwW6Q%3D&response-content-disposition=inline%3B%20filename%3DItalian_Journal_of_Disability_Studies_-.pdf

Cologon, K. (2014). Better together! Inclusive education in the early years. In K. Cologon (Ed.), Inclusive education in the early years: Right from the start (pp. 1-26). South Melbourne: Oxford University Press.

Fielding, M., & Moss, P. (2012). Radical education and the common school: A democratic alternative. London: Routledge.

Flanagan, R. (2016, March 4). Notes on the Syrian exodus: ‘Epic in scale, inconceivable until you witness it’ The Guardian. Retrieved from https://www.theguardian.com/world/2016/mar/05/great-syrian-refugee-crisis-exodus-epic-inconceivable-witness-lebos-islamic-state

Freire, P. (1970). Pedagogy of the oppressed. London: Zed Books.

Han, K. T. (2013). “These things do not ring true to me”: Preservice teacher dispositions to social justice literature in a remote state teacher education program. The Urban Review, 45(2), 143-166. doi: 10.1007/s11256-012-0212-7

Horton, M., & Freire, P. (1990). We make the road by walking: Conversations on education and social change. Philadelphia: Temple University Press.

Kelly, D. M., & Brooks, M. (2009). How young is too young? Exploring beginning teachers’ assumptions about young children and teaching for social justice. Equity & Excellence in Education, 42(2), 202-216. doi: 10.1080/10665680902739683

Mallett, C. A. (2016). The School-to-Prison Pipeline: Disproportionate Impact on Vulnerable Children and Adolescents. Education and Urban Society. doi: 10.1177/0013124516644053

Michalko, R. (2002). The difference that disability makes. Philadelphia: Temple University Press.

Silva, J. M., & Langhout, R. D. (2011). Cultivating agents of change in children. Theory & Research in Social Education, 39(1), 61-91. doi: 10.1080/00933104.2011.10473447

Souto-Manning, M. (2009). Negotiating culturally responsive pedagogy through multicultural children’s literature: Towards critical democratic literacy practices in a first grade classroom. Journal of Early Childhood Literacy, 9(1), 50-74. doi: 10.1177/1468798408101105

[1] That is, education which is critical and aware of social oppression, which values and embraces difference, diversity and disability.

 

Our Desire To Sift, Sort, Label & Categorise.

Part of being human seems to be the desire to sift, sort, label and categorise. When this applies to ‘things’ it can be useful and helpful in trying to make sense of the world around us. When it is applied to fellow humans it can be more problematic. Writing at a time of unusual political upheaval here in the United Kingdom we have become used to political commentators using superficial judgements to define, sift, sort, and categorise the protagonists into easily identifiable ‘groups’ and ‘categories’ in order to simplify for us what are often highly complicated individual political opinions & approaches.

Similarly, in education we spend time sorting, sifting and diagnosing in the hope of correctly being able to identify a student’s apparent ‘problem’.  The knowledge generated from these attempts to categorise and explain, together with much research into particular ‘conditions and ‘syndromes’ can of course be useful and helpful. The problem arises however when students do not easily fit within a certain category, or can fit into multiple categories, or can be their own unique category. Many practitioners will have experienced the exasperation that can arise from being present at meetings with special education;  mental health & community professionals. Here the hope is to bring a collective mind-set together in order to identify, diagnose or categorise a person’s ‘difficulties’ into something that can be meaningfully addressed in the classroom, small group or 1:1 situation. There can be a collective sigh of relief when it is decided that this person is ‘dyslexic’, or that person is ‘dyspraxic’, or maybe, this person is ‘autistic’. There is of course comfort in a diagnosis for the student, their parents and the professionals involved. It can of course lead to greater understanding, support and direction. However it can also lead to frustration, discrimination and alienation if the student so categorised does not ‘exactly’ fit the category they have been diagnosed or allocated to.  I can clearly remember one frustrated and angry parent arguing her point at a meeting of professionals that maybe her son did tick all the right boxes for autism; however he did not sit comfortably in the school’s expert provision for autistic children. Medicine has a neat little phrase called ‘co-morbidity’ which reminds us that within any one person the existence of more than one condition is possible. This makes the job of diagnosing, sifting, sorting and categorising much more problematic if we simply want a convenient ‘end product’. Maybe we should not be so quick to enter into this process, or maybe the starting point of the whole process is flawed. If for instance our starting point was to see each individual as unique and different it might avoid the need to ‘categorise’ in the first place. This of course would also need a complete re-think on how our society functions and in particular how we organise education, allocate resources & use our knowledge.

Aristotle reminds us that whether a particular form of knowledge is appropriate, or suitable depends upon the ‘telos’ or purpose it actually serves – is it political, expedient,  humanitarian etc? The important thing is to start unpicking the reasons behind what we do and why we do them. And ask ourselves if by ‘popping’ people neatly into ‘categories’, rather than seeing them as unique individuals is always the best modus operandi.

Graham Robertson

My prior teaching experience in a mainstream primary school eventually led me to the role of Inclusion Manager which I found to be a rewarding, if challenging role, and a highlight of my career. I am now fortunate enough to be the programme leader and tutor for our new postgraduate course at The University of East London, which leads to the National Award for Special Educational Needs Coordinator.

Having returned from maternity leave ready for a new challenge (having a baby was clearly not enough!), I jumped right in and am now teaching an incredible group of teachers who I look forward to seeing each week, partly due to their honesty about the roles they have in their settings but also because I see first hand, the camaraderie that has developed amongst them for what they do. It made me reflect on my time as an Inclusion Manager and I recalled it to be initially rather isolating, mainly as I was based in a completely separate demountable classroom, accessed through a locked gate from the school! Hardly inclusive! On a more positive note, after around 10 months I was moved into an office in the actual school which luckily had enough space to work with a very small group of children as well as house all my resources and meet with parents (as long as there weren’t too many attendees!). I finally felt included.

Considering the nature of the role, you hold a unique position in the school, typically there is one SENCo in a setting, or in larger schools, especially secondary schools, there is a team of people working as a SEND team, but there is still one named person responsible for ensuring they meet the needs of their children and young people with SEND. It is also common for the role to be assumed by a member of the leadership team, be it a head or deputy head teacher, some who are currently taking the course. However, for those teachers who are not a member of the Senior Leadership Team (SLT), can the expectations of being a strategic leader be fulfilled? Is there a mismatch in Government policy and the reality of the day-to-day demands of the SENCo role? There may well be difficulties for the SENCo who is passionate about inclusive practice but is not confident to lead a team, lead change across the whole school, manage aspects of whole school change. Tissot’s (2013) work discusses the Government’s vision of SENCOs as strategic leaders and the challenge to carry out this role effectively if their post does not support this. ‘The lack of SENCOs on leadership teams is stifling the vision of the role as well as its implementation in practice’ (Tissot, 2013, p.39). Nonetheless, there are SENCOs on the course who are not on the SLT but who do feel empowered to be a strategic leader, so is it more to do with the ethos of the school and the culture of leadership within?

My final thoughts will reflect on what the SENCo award does for our students. As I stated at the beginning, an overwhelming theme that the students mention is the value they place on coming together as a group of local SENCos, creating a ready made support network. For example, our Waltham Forest group take lunch together in a local café and discuss the challenges and successes of their responsibilities, share good practice and simply enjoy the time out of their busy schedules to reflect on what they are doing, see what others are doing and take back new ideas to their schools. Of course there is a lot of learning in the taught sessions too, we don’t just ‘do lunch’! Our taught sessions include broad and deep discussion around aspects of the SENCo position, focusing on theoretical understanding of inclusion, discussing research, exploring the new Code of Practice and interpreting Government policy.

The programme’s new intake for 2016/17 is enrolling now so if you are a qualified teacher who is either already a SENCo or holding SEND responsibilities, please do get in touch with any queries you may have. Alternatively, follow the link below to find out more about the course on our UEL website.

https://www.uel.ac.uk/Postgraduate/Courses/PGCert-SENCO

By Debbie Kilbride

d.kilbride@uel.ac.uk

References

Tissot, C. (2013) ‘The role of SENCOs as leaders’, British Journal of Special Education, 40 (1) pp. 33-40

Employable Me (BBC 2, 23^rd March 2016) has all the ingredients of the type of show that makes me cringe. Inspiring stories of disabled people overcoming their difficulties and finding happiness against the odds, giving the audience that warm, fuzzy ‘oh bless’ feeling. Footage of people struggling with everyday tasks and yet succeeding against the odds, the ‘inspiration porn’[1] we non-disabled seem to enjoy so much. One of my issues with this type of narrative is that it encourages us to focus on the difficulties, to notice the impairment and the problems, rather than finding the strengths and skills individuals might have. This ableist perspective, that views the ‘problem’ with the person, rather than with a society that cannot adapt, adds to the discourse of disability which only allows us to see the difficulty, rather than celebrate difference[2].

Within the first few minutes of the programme, however, my fears were laid to rest. While introducing us to the two protagonists of this episode, the narrator explored the idea that difficulties with finding employment comes from brains that are wired differently trying to cope with work places set up for the norm. As the show progressed, we were shown the real talents of Brett, an autistic 34 year-old desperate to get a job. He showed excellent visual skills when completing a match-stick task, as well as sitting down to play one of his own compositions on the piano. Director of the Autism Research Centre, Simon Baron-Cohen, went on to explain the real strength in understanding systems that autistic people often possess, but it is social difficulties that often mask these capabilities. In underestimating workers with ASC, employers are often losing out on adding a fresh perspective to their teams.

We later saw these social difficulties play out as Brett went for an interview. He found it almost impossible to answer any questions, and was clearly extremely uncomfortable throughout. By writing his ideas down before reading them out, Brett had previously explained how it feels to speak to strangers: “When I’m talking to strangers it’s like I can’t break through … social interaction is like a puzzle that can’t be solved – these people are waiting for a response, something, anything, and everything depends on it.” For some reason, people are often surprised by the thoughts of those who struggle to speak. It’s as if the lack of verbal communication means that cognition must also be affected[3]. Thankfully, the prospective employer was able to see potential when Brett discussed his love of computer modelling and 3D animation. Brett was given a two week trial.

Throughout his trial, we saw these two sides of Brett play out. His extreme social awkwardness with his colleagues at lunch, juxtaposed with his brilliant understanding of computer software. It seems cruel that Brett, and others like him, are judged on the things that they can’t do when applying for jobs, because these are so obvious in a world that values social skills above others. This is even more cruel when the job he wants to do requires few social skills. Perhaps one lesson Employable Me is trying to teach us is that the process for applying for a job should reflect the work that will be done, rather than simply reverting to the expected interview.

Brett was able to explain the way he sees the world in the following way: “I think very differently … my autism makes me question the world based on truth and logic … systems, no matter how complex, gradually become easier to understand the more questions you ask of them, all the secrets are there just waiting to be uncovered.” For a job requiring understanding of computer systems and software, this is exactly the type of worker any employer would want. Brett’s difficulty in understanding the intricacies of social interactions should not impact on his ability to do his work, and his employer was smart enough to see this.

At the end of this programme, what I was left with was a feeling of hope. Not that people with ASC can overcome their problems to find work, but that employers can get over their problems to see the true worth of employing people with diverse ways of thinking. Autistics are often described as inflexible, in fact the word is used as part of the diagnostic criteria (APA, 2013). What this programme made me think about is that it is the non-autistic world that is inflexible. It is employers who demand that people can negotiate the social conventions of an interview who are insisting on sameness. Hopefully Employable Me represents a shift in the way we value people, and Brett’s success can be replicated be others. With episode two due to air next week, I feel very optimistic.

Nicole Whitelaw

[1] This phrase was coined by the inimitable and spectacular Stella Young. See her TED talk here

[2] See my previous blog-post for further discussion of constructing stereotypes of autism

[3] The internet is full of examples of non-verbal autistics communicating by typing. Here is just one example. See also The Reason I Jump

Trip (1993) points to ‘critical incidents’ in the career life of a teacher that can be influential and instructive. Experiencing these ‘critical incidents’ can make one stop and think. One such incident occurred for me. A young man of about 15 years of age presented himself at the classroom door of the learning support unit in a large inner city secondary school. After knocking politely he came in. I greeted this student in the usual friendly manner and as I had not previously met him I enquired who he was. The boy replied that he was, ‘special needs’ and had been sent to see me because he had been ‘chucked out’ of his classroom for ‘no reason’. I wasn’t expecting to see him so enquired who he was again and I got the same reply. Eventually he told me his name and I launched into my usual repertoire of building rapport and getting to know him. Later, when I reflected upon this encounter I began to feel disturbed by this exchange. Here was a young man towards the end of his schooling experience and was very firmly defining himself by his ‘label’. His actual name had become secondary to his supposed ‘condition’ and seemed to have completely defined him as a person. His ‘label’ was confirmed daily at school and at home too he became very much aware that he did not function in the same way as those around him. He felt he was not as ‘good’ as his brothers and sisters at home, he had few if any friends at school, and in classroom situations he was very much aware that even with the extra adult support available he was out of his depth. Break times and lunchtimes were completely miserable for him and he was always on the lookout for some quiet ‘bolthole’ where he could pass the time more quietly before once again having to go back into the classroom. Schooling seemed to be a succession of endurance tests and obstacles to be got through. Over the next few weeks I used all my ingenuity and best ploys to interest and engage him in his ‘curriculum work’ but with limited success. A steady stream of his teachers visited me and hoped that perhaps I could somehow get him through his GCSE work as they too felt under pressure to come up with some recognisable ‘results’. I began to feel under the same pressure as the young man to get him to ‘perform’ in the way in which the institution saw as important. He told me he had tried a bit of counselling over the years which was offered by the school but when the counsellor ran out of hot chocolate and he could no longer time appointments to miss maths he dropped it.

Eventually we had a ‘breakthrough’. It came in the form of ‘American Block Paving’ – something that I was completely ignorant of but soon found myself on a steep learning curve. In gradually getting to know him it transpired that his weekends and holidays were spent working with his dad and uncles in laying pathways, pavements and driveways using American Block Paving (ABP). Over the ensuing weeks I learnt everything about ABP from this young man. We scaled down some of the shapes and tessellated them together into patterns, worked out costings and areas, sourced the cheapest ‘quality’ products and matched batches for colour and quantity and quality.  He passed on to me some of the ‘tricks of the trade’ and advised on the best tools and materials to buy and how they could be adapted to make them more useful. We investigated grades of sand, mixes of cement and drainage issues.  Had I needed a driveway, pathway or pavement I would have had complete confidence in awarding this young man the contract without hesitation. Both of us however continued to feel under pressure for him to turn his evident wide abilities into attaining the much valued GCSE currency. His interests did slowly begin to widen and we worked on connecting up his existing knowledge to many different areas. However as for the GCSE currency, he was not having any of it. Months later a member of the senior management team hearing of the situation decided to pay an unexpected visit. Trying to be as friendly as possible towards the boy, whom he had not noticed in the school before, he introduced himself and asked his name. “Pleased to meet you sir”, said the boy, “I’m special needs”!

We need to think seriously about our present schooling system which ‘sifts, sorts and labels’ according to grade position, and  concentrates upon only one element of what it means to be human.

Margaret Mead writing in the 1970’s lamented the rise of a schooling system which divorced children and young adults from the ‘real world’ and forced them into ‘youth ghettos’ where instead of learning with and from adults in real world situations they instead mostly learnt only with and from those of their own age. Adults and young people need to come back in touch with each other once more and have real opportunities to learn with and from each other in meaningful occupations. Maybe it is time for us to look again at our nineteenth century system of schooling and ask ourselves whether it really does benefit everyone in its present form. We seem to have a real problem in recognising that difference is ordinary and one size does not fit all.

By Graham Robertson

I have been privileged enough to work with young people with autism for most of my teaching career. Whenever people ask what I do, I always know what the response will be:

‘Oh, autism, isn’t that where they can’t talk?’

‘It must be hard, working with people who don’t have emotions.’

‘Don’t they get really obsessed with stuff?’

‘You mean like Rainman?’

It seems the main thing people know about autism is that it is not ‘normal’. Autistic people[1] are either seen as deficient and problematic, or endowed with superhuman abilities that have little practical use.

While trying to get people to see beyond the stereotypes can be frustrating for me as a teacher, I cannot imagine what it must be like to be a parent, sibling or autistic person faced with such immediate judgement and pigeon-holing. With a prevalence rate of approximately 1 in 100[2], it is likely that most people will have some direct experience of autism. So how have these stereotypes, which are often so far from the truth, been perpetuated?

One possible answer is that we look to the media to help us understand autism. We see quirky geniuses (Sheldon in Big Bang Theory and Saga in The Bridge) or individuals who cause significant problems for their families (Raymond in Rainman or Charlie in Black Balloon[3]). We are beginning to see more diverse depictions of autism on our screens (The Autistic Gardener, Julia in Sesame Street and the yet to be broadcast The A Word) which will hopefully go some way towards shifting perceptions. However, I believe our ableist view, which sees autism as a problem and something to be fixed, comes from somewhere far deeper.

The history of autism is a dark one that has included eugenics, ‘cure’ by electric shock and the blaming of mothers who do not love their children enough[4]. That these things have happened in our recent history may begin to explain our negative view of autism. It is my view, however, that it is the very language that is used to describe autism that has the greatest impact. Through the language they use, scientists, academics and researchers have constructed autism as a deficit. It is something that is other from ‘normal’, something to be fixed, changed and possibly even feared.

Take the language used in the diagnostic criteria currently used in the UK (ICD-10) The words used include ‘abnormal’, ‘impaired’, ‘failure’, ‘lack’, ‘deviant’, ‘weak’, ‘delayed’ and ‘restricted’. It could be argued that, as these criteria were written nearly 25 years ago that things have moved on, and we no longer think of autism in this way. However, the diagnostic criteria used in America (DSM-V) were written only three years ago, and contain a familiar list of words: ‘abnormal’, ‘deficit’, ‘impairment’, ‘failure’, ‘reduced’, ‘lack’, ‘absence’ and ‘restricted’. These criteria, which tell us what autism is, and what people diagnosed with autism are, focus almost entirely on a comparison with ‘normal’. Instead of describing strengths, outlining different perspectives and focusing on areas that are problematic for autistic people, these criteria outline the things that we ‘neurotypicals’ find problematic.

It is little wonder then, that when I tell people I work with young people with autism, they immediately think of the deficits. It is these deficits that are still used to define, diagnose and describe autism in academic and scientific literature. When a teacher has a child with autism in their class, the diagnostic report will be full of examples of what the pupil cannot do, and the skills the pupil lacks.

The reason this matters so much becomes apparent on reading any newspaper, on almost any date in the last few years. There seem to be constant stories of autistic people being seen only for their ‘deficits’, and being judged as a problem to society. There was the boy locked in a cage at school when he became too difficult, the young man left on a locked ward for 6 months and the boy denied residency of New Zealand because he would be too expensive for the state to support. These are just a few of the dozens of stories of autistic people being denied their rights, and in many cases suffering mental and physical harm. It is the view of autism as a deficit, something less than ‘normal’ that allows this to happen.

So what is the way forward? Some autistic advocates have suggested alternative diagnostic criteria, that look at differences rather than deficits (my favourite example can be found here) Similarly, some academics are starting to look more closely at how autism is assessed. One example looks at how a strength-based assessment can support teachers to see the potential in their autistic pupils, rather than focusing on the problems.

Those of us who work, or live, with autistic people have always known that it is a different (and some would say, better!) way of understanding the world. Until we start to change the language used and the focus on deficits in criteria, however, the rest of the world will go on expecting limiting stereotypes such as Rainman.

[1] Throughout this blog, I will be using ‘people with autism’ and ‘autistic people’, reflecting both the ‘people first’ movement and autistic advocates who believe that autism is part of them, meaning that the description ‘autistic’ is most appropriate. For more information about this debate, see this 2015 study

[2] See here for further facts about autism

[3] See here for a list of depictions of autism in the media

[4] For a comprehensive account of the history of autism, see Neurotribes by Steve Silberman